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Re: No discussions or questions from close friends

AnonymousUserAAnonymousUser Posts: 49,578
edited 06/11/2012 - 7:31 AM in Chronic Pain
I have Adhesive Arachnoidits of the lumbosacral spine, had a 4 level fusion, 4 level laminectomy, synovial cyst removal and multiple never impingents from 9 herniated discs, spondylosis, severe stenosis, Facet Disease. During surgery I had rods, pedicles, and screws placed at the Lumbar Level. Osteophytes were discovered throught thew spine. My arachnoiditis was discoved in a contast/no contrast MRI 3 months post surgery. I also has a total wrist fusion with hardware placemnent and then sunsequently developed RSD aka CRPS in the left hand and arm. In all of 2008, I was in severe intractable chronic pain with a neurostimulator placement in June. I spent most of that year reclining on a couch taking strong meds and "out of it" most of the time. I recently had a CT Scan of the cervical spine showing similar problems found in my lumbar spine before my lumbar surgery. I walk with a cane limited to 5o yards walking, 30-45 minutes sitting, the same standing. I have to continue changing positions to reduce my pain since it builds again in each new positiion change after an initial reduction. Now I am suffering from severe numbness of my shoulders, arms and hands every night in bed. Likely due to all the nerve impingements and herniated discs remaining in my neck. What I do not get is how my close friends pretend like nothing is wrong. I get no questions, comments or verbal support. Its like nothing ever happened or is wrong with me. Is this normal? I do not even talk about it but they know what I have been through and continbue to experience. I just need some understabding of the "3 monkeys" behavior. Can anyone identify with this odd behavior that seems to be so common for me?
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13

Comments

  • This is all too common, the longer our pain lingers the less people know what to say.

    I suspect they feel like they are badgering us or reminding us of the pain by asking how we are?

    I don't know for sure, but after 3 years of this I no longer ask. I have one son who will ask how I am and try to prod me into doing things. My other son and wife just seem to wander past. They acknowledge my presence, but ask no questions.
  • Welcome.
    We are in CP-we are long time CP patients,they are not,nor should they be expected to be.

    I do realise that I sound harsh,and I promise you that I don't mean it personally.I read this question every single day,and I never answer it because my answer would sound cold,cruel,and unfeeling to any reader......but if you knew me you would know that I am anything but uncaring.

    For over 25 years I have been in CP,and there are times when I get frustrated-because contrary to what anyone might tell you-nobody ever gets completely accustomed to the CP lifestyle,and even those who think that they do are surprised with the harsh reality of lonliness when we need an understanding ear,and there is nobody there asking the questions we wish/need to talk about.

    I don't know about you.....but I certainly don't want to be the one to always bring up the topic of my pain....I never want to bring it up around the people I love.So,naturally I get a bit pissed after a few years and surgeries go by,and nobody has asked me a single question.It changes a person.Makes you realise just what and who is important.Just how small you are.

    Try going for a month without initiating a conversation involving your pain.Of course you have to talk with your Drs and such,and you need the support of fellow pain sufferers,like us people here,but I mean in RL(real life).See how things change.

    OK,sorry-I ran off on the mouth again.My whole point was that we can't expect people to be like us....it wouldn't be fair to them,and it's just not natural for people to understand.A person can't understand something that doesn't or hasn't affected them on a personal level.Like,you don't know a person until you live with them.

    Just my thoughts.
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  • BTW~I don't really think it's that people don't know what to say..so much as it is that they don't think there is anything left to say.

    You have a problem for instance,an injury,car accident,etc...,people are'omg,are you ok,and yada yada yada........".You have surgery to correct the injury,and people may send you flowers and visit you in the hospital,ask you how your recovery is for a couple,few months,and then nothing.

    In their minds it's over.You had an injury,you had surgery,and you are healing.THE END. to them

    To us it might be the beginning of the end,but whenever we continue telling them,well,some people even see it as complaining and whining.They really just don't know,and some people never will.

    That's what this support forum is good for.For me,even just reading here is helpful
  • Thanks for your honest reply. Thats what I wanted. The thing is that I never even mention it to them. Initially, of course,I briefed them on what was dicovered but never dwelled on it or appeared to seek any sympathy. Even my briefing illicited no discussions. My disease has obviously progressed. My point is that there is a total disregard for the obvious even though I do not discuss or dwell on my issues. I know me and I would likely at least say, "I'm sorry for your condition, if there is anything I can do, please do not hesitate to ask me for my help." That would at least seem appropriate rather than saying nothing even when I have obviously gotten worse and had to give up a very lucrative 24 year career I loved. I still do not get it. Maybe I'm expecting too much. I just know I would at least acknowledge the existence of the disease and offer my support. Even when I began having to use a cane all the time, not one question. I do not expect them to understand but there is obvious discomfort eminating from them. I do not feel sorry for myself nor do I show any signs of that. I have a great attitude but at times I am obviously having a difficult day but never seek attention. It just seems unnatural to me especially when you have been close friends for so many years. We always have get togethers etc. I do not expect understanding, just some evidence, even if so slight, of support and concern. Am I expecting too much from my very close friends who are like family? Even my brothers never say anything but my sisters voice their support, have quetions and express their concerns. That would be very natural to me. The way they act is like they could really care less but we still have very nice visits just as before my ilness occurred. I will just drop it now and accept them for the god frinds they are anyway.
  • You mention your sisters care. That is/may need to be enough. You can't expect everyone to care. I don't know if I could even DEAL with that!

    Think about it, if EVERYONE said something about your/our pain... Would anything else ever be talked about around us? I have grown very tired of being in pain, talking about it.

    My lasting frustration is people who are CLOSE to me asking me over and over to do things I can not do!
    That same things too. I try and express why I can't do XXX and it does not seem to ever sink in. I now simply say, "I can't do that".

    I don't mean to be harsh in this reply. Sorry if it reads that way.
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  • No offense taken. I DO NOT want everyone to care or keep up any discussions, comments or questions. That would be a big pain and just a constant reminder I dont want. I was simply questioning when close friends NEVER even asked what is wrong, offered support or had any questions about anything at any time. I do not wish to talk about my pain, limitations and various issues. It is simply not undestanding when there has been absolutley no comments, questions or offered support when I first learned about my affliction. It was like nothing ever happened. Thats what I meant. You obviously misunderstood what I meant. I am not seeking pity, just some common decency of a caring friend expressing a little concern when they first hear abouit it. 3% of people with my disease progress to a wheelchair and many commit suicide due to the intractable pain. I will not be either of those few but I do have a serious disease. Maybe I am off base. I dont know. I guess I have unrealistic expectations and just expected what I would do if the situation was reversed and this happened to my close friend. Thats all I have to say.
  • I indeed did not pick on the fact they had never asked or mentioned the problem. Did they sit and listen when others talked to you about it? I have family that has never mentioned or asked. My brother is the same, he has never said a work to me about it. I return the favor! Now that I think about it my sister has not either! So, some people just don't care I guess?

    Do you have someone in your family who is the illness records person? These peoples worlds revolve about telling everyone everything about all their known worlds medical history and current conditon. My mother does this, perhaps the others think that being kept informed is enough!

    I know I would probably not understand if this had not happened to me. I remember feeling indestructable when young...
  • dilaurodilauro ConnecticutPosts: 11,348
    As others have pointed out, it is a sad situation.
    There are two extremes when it comes to this.

    Too Much

    Here is the situation when people constantly ask you questions after questions. Or worse, they just say,
    "Oh you look good, you must feel ok" And that scenario can go on and on.
    It gets to the point where you do not want to discuss your situation with anyone. Two years ago, I was using a cane to get around. We went to a community function and after 20 minutes, I got so tired of people asking me questions, that I excused myself and put the can back in the car. It was easier to waddle around vs answering questions.

    Too Little

    Here is when people tend to ignore you or go along as if you have no problems. A recent situation with our friends illustrates this. Our good friend had his 60th birthday. The party was up in the Caskills of New York at a Sky resort. There were about 20 people going. The plan was to stay at a Tupo (which I still dont know what it ise) and the days and nights would be spent with ski activity.
    Well, I can't ski any more, I cant use snowboards, skating is really tough... So we decided not to go.
    Not only could I not participate in the fun, there was no access to the main lodge and no place to go.
    My wife, being the super friend that she is, told them no, we were not going.. She explained that it would be difficult for me to just sit there and she would not feel comfortable going out and having fun. Well to this day almost 6 months gone by and this 'person' still is angry at us for not going to her husband's 60th.

    Some people just do not get it
    Ron DiLauro Veritas-Health Forums Manager
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Thanks everyone. At least I found this site to interact with people I can identify with. You need to understand my life just fell apart not very long ago. If you get to my profile page, you'll be amazed at my medical history that has not been that long. I just fell apart all at once, it seemed. Epidurals, radiofrequency,),more surgeries, spinal stimulator, wrist fusion, CRPS, 9 herniated discs, stenosis, spondylosis, facet disease, synovoal cysts, DDD, osteophytes, now all the same just found in my cervical region at all levels, numbness of my feet, right hip, and now shoulders, arms and hands so I cannot sleep much at all. This is new due to osteophyte, 3 cervical herniations,severe foraminal narrowing, discogenic spondylosis, nerve impingements at all levels. All this is the last year and a few months (except the wrist) and now learn I need bilateral knee replacements. I do not tell my frends these things but I can to all of you and it just feels good to get it out since I just feel like no one really cares so I just dont say anything. Its been tough but I am making it. Thanks again.
  • Good morning Jarhead & All,
    We can take a look around and see the same reaction to, the homeless,the mentally ill,the veterans,the handicapped etc...the "familicide" occurences have drastically increased.The days of generations of families taking care of each other is long gone.We live in a world where ME,ME,ME is the attitude. The thinking of past generations was,be a good neighbor,friend,spouse,sibling and take care of each other.That's not to say there's not some good,caring people out there,but they are few and far between.Selfishness,prevails.I had a neighbor cook me a ham dinner and bring it to my house a few days after I had my recent surgery.Yet,my husband would ask ME what's for dinner.(same scene last year with my in-laws after my ALIF)My husband will stand and
    watch me struggling to do something and will not offer his help.I can ASK for help and his response will be"what you're ok".My mom's comments are concerned with blaming me for my back troubles.(the jobs I've had in my life have been really physical,)so therefore my pain is my own fault.Forget about showing any basic concern,I get myself to the Dr,handle all the financial stress and never does my husband want to know what's going on.
    I think people have lost the ablity to communicate too.I know alot of people that are embarrassed to show any kind of affection or attention to another human being.They don't know how to express simple kindness.Some think if they show any concern or love,that they have lost some imaginary competition.That's why support boards like this one exist.If we could get the help and support we need somewhere else,we wouldn't be on here.
    Well, that's my story....and I'm stickin to it!
    Just know Jarhead ,I do understand,and care.I hope you feel better(cuz you're a mess!)My ole spine decided to do a number on me all at once too.
    You have a nice day....Sagehen
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